Attending to Total Pain in Juvenile Huntington Disease: A Case Report Informed by Narrative Review of the Literature.

Objectives: To consider the impact of juvenile Huntington disease (JHD) from a biomedical, symptom burden, and total pain palliative care perspective.

Methods: This case report was informed by a narrative review of the literature with inclusion of expert opinion from pediatric palliative care, an adult and pediatric neurologist, and a child psychiatrist. Audio-recorded qualitative interview and coauthorship with the pediatric patient's primary caregiver (his mother).

A survey-based study identifies common but unrecognized symptoms in a large series of juvenile Huntington's disease.

Aim: The symptoms of Huntington's disease are well known, yet the symptoms of juvenile Huntington's disease (JHD) are less established due to its rarity. The study examined a cluster of symptoms considered to be common, but under-recognized in JHD: pain, itching, sleeping difficulties, psychosis and tics.

Materials & Methods: A symptom survey was constructed using the online tool Qualtrics and dispersed to JHD caregivers through websites.